Different treatment in Germany

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Dagmar
Posts: 11
Joined: Wed Aug 07, 2019 2:02 pm

Different treatment in Germany

Postby Dagmar » Wed Aug 21, 2019 1:17 am

Hi

I am wondering if anyone has been to Germany for alternativ treatment or chemo treatments?

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Different treatment in Germany

Postby TinaFish » Fri Aug 23, 2019 9:31 pm

My idiot sister suggested that I MOVE to Germany because I have German citizenship. 1) my passport is expired. 2) I speak the language, but there's a difference between "Guten Tag" and figuring out how to rent an apartment, figuring out their public transportation system, and, oh yeah - leaving my small children in the US with WHOM (not my sister) to take care of them? Oh yeah, I'd probably have to pay for my apartment and food in Germany too! The business that I own can't fund that if I'm not around to run the business. Tangible goods. Literally tons worth. I can't bring it all to Germany AND THEN figure out how to use their version of stamps.com.., assuming there is one!

My sister's rationale was that the healthcare system in Germany was somehow better than here in the U.S. I don't even know if that's true. Supposedly it's very good.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

stu
Posts: 1196
Joined: Sat Aug 17, 2013 5:46 pm

Re: Different treatment in Germany

Postby stu » Sat Aug 24, 2019 1:30 am

We used to have a member here who spent a fortune , and I mean a fortune on German clinics . He did do some chemo in the mix as well if I remember right so it would be hard to separate which was making the impact .
However what he did or did not gain physically he seemed to gain something from the process . He also seemed to have a lot of available cash at the beginning but soon motored through it . I got the impression if you kept paying they kept giving .
He was quite a character and I ended up following his journey . Sometimes willing him on sometimes quietly sad that his money was evaporating.
Who I am I to judge though . He kept an extensive blog . Petelostatsea . Might be worth reading it before you embark as he was honest about the cost .
Pete won some battles along the way but died peacefully with his family .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 258
Joined: Tue Dec 20, 2016 8:48 pm

Re: Different treatment in Germany

Postby Rikimaroo » Sat Aug 24, 2019 2:14 pm

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Different treatment in Germany

Postby TinaFish » Sat Aug 24, 2019 11:12 pm

Rikimaroo wrote:Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo


That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Different treatment in Germany

Postby MetastaticEquilibria » Sat Aug 24, 2019 11:28 pm

TinaFish wrote:
Rikimaroo wrote:Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo


That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.


Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.
Last edited by MetastaticEquilibria on Sun Aug 25, 2019 3:37 am, edited 2 times in total.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: Different treatment in Germany

Postby Punky44 » Sun Aug 25, 2019 12:07 am

My mom did proton-beam radiation at Mayo.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Dagmar
Posts: 11
Joined: Wed Aug 07, 2019 2:02 pm

Re: Different treatment in Germany

Postby Dagmar » Sun Aug 25, 2019 9:57 am

Thank you very much for all the answers. I have been in contact with Heidelberg regarding proton and heavy ion beam therapy. Hope is everything.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Different treatment in Germany

Postby TinaFish » Sun Aug 25, 2019 10:38 am

MetastaticEquilibria wrote:
TinaFish wrote:
Rikimaroo wrote:Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements.

https://www.heidelberg-university-hospi ... n-therapy/

Rikimaroo


That's horrible. Really, I just illustrated how impossible it would be for me to move to Germany for treatment, and it seems criminal that the U.S. wouldn't offer the technology that other countries offer.


Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.


That's much better news. I remember seeing www.mycaliforniaprotons.com. So it's much moreso recommended to go to a place like that for radiation, right? I may have to have radiation soon. My oncologist referred me to a City of Hope location very close to me, and the radiologist (Dr.Botnik) made a great impression on me. City of Hope has a great reputation, but I don't know if they offer proton therapy.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Different treatment in Germany

Postby MetastaticEquilibria » Sun Aug 25, 2019 6:25 pm

TinaFish wrote:
MetastaticEquilibria wrote:Actually, the US is catching up in the number of proton and heavy ion beam therapy facilities. I think Japan currently has the largest number of proton and heavy ion facilities of any country in the world, but the US has been on a building spree the past few years and is rapidly catching up in absolute numbers, though still behind in per-capita terms. The problem is cost and insurance coverage, and in fact some US facilities have had to shut down due to the lack of patients who can afford it, as I understand. But the technology is definitely offered there, for those who can afford it.


That's much better news. I remember seeing http://www.mycaliforniaprotons.com. So it's much moreso recommended to go to a place like that for radiation, right?


It depends. In some cases standard (x/gamma) radiation is considered safer, such as near the colon or intestines, where the risk of punching a hole in the wall (which can quickly lead to fatal sepsis) may be too high with protons or heavy ions. At least that was what proton and heavy ion doctors told me when I needed pelvic radiation. But in many other cases proton or heavy ion beam radiation is better due to less damage to surrounding tissues, and a higher chance of being able to do it again if there is a recurrence nearby, which is generally lost with x/gamma radiation. In the case of my liver, I had to repeat proton treatment due to recurrence in a different part of my liver, so I consider that option to have been priceless.

But anyway, both types of treatment (x/gamma and proton/heavy ion) have their places.

I may have to have radiation soon. My oncologist referred me to a City of Hope location very close to me, and the radiologist (Dr.Botnik) made a great impression on me. City of Hope has a great reputation, but I don't know if they offer proton therapy.


The two locations for proton therapy in California seem to be Loma Linda and California Protons Cancer Therapy Center. Loma Linda has decades of experience with proton therapy, so I would probably lean towards them if I had to choose between the two.

Add: Huh, according to this article there are no heavy ion treatment facilities in the US at present. I could have sworn I saw some conference slide stating that some were coming online soon there, but it sounds like nothing has actually reached the funded stage yet. Sorry for any confusion. Though there are indeed a number of proton facilities there.
Last edited by MetastaticEquilibria on Mon Aug 26, 2019 3:57 am, edited 4 times in total.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Different treatment in Germany

Postby MetastaticEquilibria » Sun Aug 25, 2019 11:02 pm

Dagmar wrote:Thank you very much for all the answers. I have been in contact with Heidelberg regarding proton and heavy ion beam therapy. Hope is everything.


Hi Dagmar,

Any details you care to share about your situation?
You don’t have to reply if you don’t want to, of course.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Dagmar
Posts: 11
Joined: Wed Aug 07, 2019 2:02 pm

Re: Different treatment in Germany

Postby Dagmar » Mon Aug 26, 2019 12:05 am

Hi metastastic equlibrimia,

I was diagnosed with stage iv colon cancer 2015. I have about 20 lung metastases. I have done some of the standard chemotherapies. Starting oxiplatin today. They say that they cant operate on my tumors. So ofcourse I am looking for alternative. I am only 50 years Old ( sadly some are much younger on this site). Wild kras. Its in my familj.

Thanks
Dagmar

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Different treatment in Germany

Postby MetastaticEquilibria » Mon Aug 26, 2019 3:08 am

Dagmar wrote:Hi metastastic equlibrimia,

I was diagnosed with stage iv colon cancer 2015. I have about 20 lung metastases. I have done some of the standard chemotherapies. Starting oxiplatin today. They say that they cant operate on my tumors. So ofcourse I am looking for alternative. I am only 50 years Old ( sadly some are much younger on this site). Wild kras. Its in my familj.

Thanks
Dagmar


Do you know if you are MSI high or not?
Or your tumor mutation burden level? Those might open up some immunotherapy options.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Dagmar
Posts: 11
Joined: Wed Aug 07, 2019 2:02 pm

Re: Different treatment in Germany

Postby Dagmar » Mon Aug 26, 2019 4:37 am

Hi again,

I don't know if I am msi high or not. I did all genetic testing in Ireland, I think they only tested for the most common genetics. I was negative on all of them. But I will ask my doctor when I get a chance. Which immunotherapies are you thinking of? Thanks!

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Different treatment in Germany

Postby MetastaticEquilibria » Mon Aug 26, 2019 4:56 am

Dagmar wrote:Hi again,

I don't know if I am msi high or not. I did all genetic testing in Ireland, I think they only tested for the most common genetics. I was negative on all of them. But I will ask my doctor when I get a chance. Which immunotherapies are you thinking of? Thanks!


If you are MSI high, or are not but have a high tumor mutation burden, then Keytruda or Opdivo might be worth looking into. If you are not MSI high (that is, you are MSS), then combining Opdivo with Stivarga has shown some promising results, according to a recent preliminary study done here in Japan. Nothing guaranteed, of course.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 now 130
CA19-9 2.8-232 now 232
RAS wild MSS MET+ TP53-
UGT1A1*28 homo


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